Actemtra Reaction

By wonderwoman Thursday, April 26, 2012

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Hi Everyone.

Today was the day for the first Acetmtra Infusion. I went reluctanly and hopefully. After some extrem flaring of rib carltlidge recently I felt I had to jump into the Biologic pool, although my rheumy has been trying unsuccessfully to get me there for three years due to chronic infection.

The infusion centre was pleasant, the nurse was pleasant and helpful, I still my fears and sat while he found a vein, a bit of a difficult proposition.

He fed it slowly for fifteen minutes, I felt lightheaded, dry mouth and slightly weird, but talked myself into the idea that it was just nerves.

He turned up the flow and within five minutes I felt much worse...weird all over, dry mouth tight muscles, stuffy head.

I asked him to turn it off and he called the doc who confirmed it as a reaction. Yay.

So here I am slowly feeling better, with a swollen area around the injection site, and intermittent lightheadeness. I was released with a warning to call an ambulance it I felt worse Yay....

They want me to try again next month with prednison and claratyne dosage beforehand, but I don't think I will. I have a lot of these reactions, so it is hard to live in fear of them all the time. I am also going off Methotrexate again. I had stopped it for two months due to extreme nausea, and after three weeks back on it, the nausea is returning. My body probably needs a break.

So on with the show. Keep your chins up everybody [ no, not a typo, a joke]

Humira storage when travelling

Comments (7) | Add comment

V, Health Guide

4/28/12 9:21am

Oh, sweet lady! You have really been thru the wringer with your RA. Do the other bios like Humira or Embrel not work for you? I have friends who are on infused drugs and they have to have massive amounts of prednisone and benadryl beforehand to control their reactions to the infused drug. That is a scary proposition. How are you feeling today?

Hugs,

wonderwoman

4/28/12 3:15pm

Hi V

This is the first biologic I have had as I had a chronic sinus infection and was waiting for surgery to clear that.

I have had throat closing reactions to other drugs before so am a bit of a drama queen, he he

I felt dreadful for the rest of the day took loads more prednisone to settle it.

Strangely, I felt better t'han I had felt for years the next day, too soon for it to be Actemra, especially as they got only 20 mins of the infusion time in, before my reaction.

Anyhow,the nurse said I am only one of two out of the 150 treated there who has reacted.

They had originally said they would give it to me at the hosital, so if I agree to try again it willbe at the hospital I think.

It is early morning here in oz, and all my pain is back, so the extra prd has worn off.

So another glorious day in paradise, it is a beautiful part of this country, although rain has ben thundering down for days.

How are things with you?

V, Health Guide

4/29/12 9:47am

Oh, Wonderwoman. I just want to hug you.....gently of course! I wonder why they didn't let you try Humira before starting you on infusions. Hmmmmm.

I am fine. It is raining here, too. I am on my way to the shower soon and to church. I dread going out in the rain. I would rather curl up w/a blanket and a cat. LOL I wonder if this is going to be as good as it gets. I think I will have a conversation with my RD when I see her in June. I am using the little carts in the stores, and it is so wonderful because my ankles don't hurt. I am having mobility issues because of my ankles, feet and knees. But, I am living my life. I refuse to let this disease steal my joy.

Please take care and keep us informed. Special, soft hugs coming your way.

Blessings,

BerserkeRA

4/28/12 10:15pm

hey WW,

So sorry to hear about the reaction. When I tried Actemra, after 15-20 minutes, I felt like I was falling down a well (maybe a faint?) and really nauseous out of no where. The attending said I was tachycardic, so didn't think it would be good to re-try it that day... I said "No way do I want to try it again!"

I haven't so far. I've had 2 reactions -- a very minor one to remicade (itchy / hot throat, and increased temp) and this one. Not fun.

Have you tried Orencia at all? It was very easy for me (no miracle drug either, but hey).

Here's hoping you find some relief soon!

wonderwoman

4/28/12 11:05pm

Hi No I was meant to try orencia first but did not Don't think I will try anymore I am very reaction prone

Lene Andersen, Health Guide

5/ 9/12 7:09pm

oh, no! Sorry to hear that you had a reaction - it sounds scary.

you don't have to give up hope, though. One of our team members, Lisa Emrich, is on Rituxan and had a reaction in her first infusion. With proper precautions taken, her second infusion went much better and best of all, the medication is working for her. Go check out the links I've included so you can read about her story. I'd also recommend that you have an in-depth conversation with your rheumatologist about your concerns and what precautions they'd put in place to ensure that you'd have a safe experience. Then think about whether this may be worth a try. I'll ask Lisa to pop by and share her thoughts on the pros and cons of diving into a second infusion when you've had a reaction for the first.

Lisa Emrich, Health Guide

5/ 9/12 10:00pm

Hi WW,

Oh boy, I know how you probably felt. Like Lene mentioned, I've had infusion reactions when getting Rituxan. The first time was the most dramatic as I kinda waited for things to get better, but they only got worse. They gave me additional IV steroids and IV benadryl which helped calm things down.

For the 2nd infusion, my rheumatologist ordered more premedication of IV steroids and benadryl with extra onhand if I started having another reaction. I did have a reaction but that time I didn't wait so long to tell the nurses, and additional steroids and IV benadryl stopped the reaction.

After 8 infusions of Rituxans, I'll be honest and share that during 6 of those I had a reaction. But with trial and error, my rheumatologist, the infusion nurses, and myself have finally found a formula of premedication and altered infusion rates which seems to help.

Instead of 100mg steroids, we mix 250mg steroids in a saline bag and infuse that first. Then they mix 50mg benadryl into a smaller saline bag and infuse that next. Then we start the Rituxan IV at the slowest rate and keep it there without speeding up the infusion rate every 30 minutes as is the standard protocol. Personalizing my personal infusion protocol has really helped avoid the infusion reaction (which really can make you feel crappy).

The really good news is that Rituxan is working for me and I've been able to do so much more in the past two years than I would have imagined. I'm glad that my rheumatologist has been willing to experiment to find a solution which seems to work for me.

I know how scary it can be when things don't seem to go quite right during treatment. It takes guts and patience to try again. If you do decide to try again but with different premedication and precautions, be sure to tell the infusion nurse as soon as something feels not quite right. You can always ask for the infusion to be stopped (or slowed down) again.

Also don't give up on all biologics if Actemra isn't the right one for you. There are other medications which work in different ways.

oh, also. At my infusion nurses' recommendation, I keep oral benadryl handy just in case I have an unexpected reaction to meds or anything else since it seems that I'm sensitive. I've not had to use it, but I keep a few pills in my purse.

I hope that you are able to find a combination of treatments which works for you. How have your symptoms been since you stopped methotrexate? Have they stayed the same or have they gotten worse?

Actemtra Reaction

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